Medical leaders have signed a joint statement in response to the National Institute for Health and Care Excellence (NICE) guidance on the treatment and diagnosis of Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS).
We are pleased that NICE have now published their guidance for the management of ME/CFS which is a chronic, poorly understood condition and can be highly disabling and distressing. It is important that all patients with this condition are given access to the best possible services and treatments available.
The published guideline contains some positive changes, but these do not go as far as we would have liked and understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health. We also do not think the changes represent the positive discussions that have been had with patient groups.
As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as Cognitive Behavioural Therapy (CBT) as of less value in alleviating symptoms than pharmacological interventions.
There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed but the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future.
When commissioning services we would reiterate that:
Graded Exercise Therapy) as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.
CBT remains a valuable treatment for alleviating symptoms in ME/CFS and services should ensure patients have access to this and other psychological therapies.
Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital setting and thus if commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out.
Commissioners must also take action to ensure training and support is available for the full range of specialist ME/CFS roles needed and are easily accessible for GPs and other clinicians across the NHS, so that this guidance can effectively be put into practice.
Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate.
Royal College of Physicians
Royal College of Physicians of Edinburgh
Royal College of General Practitioners
Royal College of Psychiatrists
Academy of Medical Royal Colleges
Faculty of Sport and Exercise Medicine
Faculty of Occupational Medicine